To enact sections 5.2239 and 3701.136 of the Revised Code to designate November as “Complex Regional Pain Syndrome Awareness Month” and to require the Department of Health to include on its web site information regarding the syndrome.

BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:

Section 1. That sections 5.2239 and 3701.136 of the Revised Code be enacted to read as follows:

Sec. 5.2239. The month of November is designated as “Complex Regional Pain Syndrome Awareness Month” to promote public awareness of complex regional pain syndrome, also known as reflex sympathetic dystrophy syndrome.

Sec. 3701.136. (A) As used in this section, “complex regional pain syndrome” or “CRPS,” also known as reflex sympathetic dystrophy syndrome, means a debilitating and progressively chronic syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch.

(B) The department of health shall include information on its web site to promote complex regional pain syndrome education in a manner that enables individuals to make informed decisions about their health. The information on the web site shall include all of the following:

(1) The cause and nature of CRPS;

(2) The risk factors that contribute to the manifestation of CRPS;

(3) Available treatment options, including the risks and benefits of those options;

(4) Information on environmental safety and injury prevention;

(5) Information on rest and the use of appropriate body mechanics;

(6) Information on the availability of CRPS diagnostic, treatment, and outreach services;

(7) Information concerning any other factors or elements that might mitigate the effects of CRPS.

(C) The department shall notify boards of health, hospitals, clinics, and other health care providers about the availability of information concerning CRPS on the department’s web site.

Section 2. Section 3701.136 of the Revised Code, as enacted by this act, shall take effect ninety days after the effective date of this act.

Section 3. (A) As used in this section, “complex regional pain syndrome” or “CRPS” has the same meaning as in section 3701.136 of the Revised Code.

(B) The General Assembly finds and declares all of the following with respect to complex regional pain syndrome:

(1) CRPS occurs in five per cent of all cases of nerve injuries.

(2) CRPS is thought to be a neuropathic pain syndrome that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury.

(3) While the cause of CRPS is unknown, the syndrome is thought to be the result of damaged nerves of the sympathetic nervous system.

(4) The syndrome is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels, and bones, and if untreated, can result in permanent disability and chronic pain.

(5) CRPS is often misdiagnosed because the syndrome is either unknown or poorly understood. The prognosis for patients suffering from CRPS is generally much better when CRPS is identified and treated as early as possible.

(6) If treatment is delayed CRPS can quickly spread to an entire limb and changes in bone and muscle may become irreversible, resulting in limited mobility, atrophy of the muscles, and eventual permanent disability.

(7) Since a delay in the diagnosis or treatment of CRPS can result in severe physical and physiological problems, and early recognition and prompt treatment of CRPS provides the greatest opportunity for recovery, it is in the best interest of the public to require the Department of Health to include information on its web site pursuant to section 3701.136 of the Revised Code to educate both individuals and medical professionals regarding this debilitative condition.

Section 4. This act shall be known and may be cited as the “Complex Regional Pain Syndrome Education Act.”

Sixteen years after having the rug literally pulled out from under her life, she is alive, coping, functional and contributing — a major feat in the face of what she’s up against.

Yes, she’s mourned the loss of her dreams: She will never be a mother or a wife or look toward retirement after decades of teaching.

Instead, survival has been her focus — along with learning how to play the horrible hand she was dealt.

“Life can be a daily struggle,” she admits.

In July of 1992, this able-bodied English teacher from Staten Island jumped up to reach for a book on the top shelf.

That’s all it took.

When she landed, she slightly sprained her right foot. A week later, she was experiencing a severe burning pain, which migrated to her other leg.

Her X-rays were negative, and her first four doctors were baffled. While they took her seriously, they could not explain her pain’s excruciating nature — a pain so bad that she could not return to teaching; pain so bad that to this day, she cannot walk from Sears to Macy’s in the Galleria or stand in line at the bank if the tellers are tied up with complicated deposits.

“I’m only comfortable driving in a five-mile radius from Chester,” she says. “I’m a regular presence at the Chester Library.”

Finally, a diagnosis

It wasn’t until she saw a fifth doctor, an orthopedic surgeon from New York University’s Hospital for Joint Diseases in Manhattan, that she had an answer: reflex sympathetic dystrophy, or RSD, also known as complex regional pain syndrome (CRPS).

“It took 10 months, which is relatively fast, but not fast enough,” she says. “Some people wait years for answers.”

However, Langton says it’s when a diagnosis is made almost immediately — and critical physical therapy starts promptly — that the best results are achieved.

“Our usual course when we’re injured is to rest what hurts,” she says. “Today, we know that with RSD, quick intervention by a knowledgeable physical therapist who uses gentle movements and treatments such as hydrotherapy is key to a better outcome “¦

“In 1992, I couldn’t get any information.”

That fifth doctor instinctively prescribed a year’s worth of daily physical therapy — the right course of action, but months too late for pain reversal. “Pain is my constant unwelcome companion,” she says. “Although it waxes and wanes, it’s always there. “¦ I’m hopeful about some new medications, and I’m about to start one “¦ medications that target neurological pain.”

For it seems with RSD that while there is no physical reason for pain, the brain is still being bombarded with pain messages.

And despite a year of physical therapy, eight sympathetic nerve blocks and various medications, the pain is still present. Because cold weather aggravates her symptoms, rather than experiencing winter fun, Langton had to prepare mentally for more pain, knowing that some relief will follow when spring and summer arrive.

“I can get around the house pretty well, but venturing outside can be scary,” she says.

‘A young woman with other plans’

Langton admits that early on, the reality of RSD was tough for her accept.

“I was a young woman with other plans,” she says.

However, she credits her mother and identical-twin sister with pulling her through her darkest days.

“They wouldn’t let me quit life,” she says.

Langton is a Monroe-Woodbury graduate who subsequently relocated to Staten Island. Pre-RSD, she’d walk an hour a day. Post-RSD, when her twin sister decided to return to the mid-Hudson as a gym teacher, Langton knew that was where she needed to be.

It is because of her sister that Langton also lives in a safe neighborhood in bucolic Orange County. With that safety and strong support network, she gradually learned to look outward.

“I was known as the funniest teacher in the English lounge,” she says. “I know I was verbally funny “¦ and I began to think: How can I be funny on paper?”

The voracious reader who’s grateful to be alive during the TV era has another endeavor that fills in between those times each day when she has to elevate and cover her painful and terribly cold limbs: She writes.

Langton has been making it a point to spend at least 15-30 minutes each day putting thoughts on paper.

What she pens isn’t sob stories or woe-is-me accounts, but witty essays.

“I found comfort and tremendous satisfaction in writing,” she says of the humor columns that started to flow, a number of which have been published in a local weekly newspaper.

Then she considered the 150 or so essays that she’s written since age 40.

“I’m only 46 now.”

Wouldn’t the best 80 make a good book?

And perhaps the profits could go to RSD research.

“My sister, again, had a hand in this,” Langton says of her self-publishing venture, which required several hundred dollars up front — a near impossibility for someone whose sole income is Social Security disability. “And she offered excellent repayment terms.”

A New York Times article gave its stamp of approval to authorhouse.com, through which “Sense and Nonsense” is available. The 274-page paperback is available for $14.10, of which $9.83 goes to the publisher and Langton’s share, $4.27, goes entirely to the Reflex Sympathetic Dystrophy Syndrome Association to find a cure.

“I’ve just gotten my first statement, and I sold 28 books. I’m delighted,” she says. “I have no idea where they came from.”

But these unexpected orders have fueled Langton’s desire to continue writing, to contribute to finding a cure for this devastating disease.

“When I dream, I’m walking and running. That may or may not happen,” she says. “But at least with this book I can leave something behind that says Mary Langton was here.

“I won’t leave a child behind. “¦ My book is my child. And I hope it behaves.”

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The nature of complex regional pain syndrome is puzzling

On average, patients see up to 5 physicians before a diagnosis and treatment plan is made

Monday, February 09, 2009

By DR. JACK D’ANGELO

Staten Island Advance

STATEN ISLAND, N.Y. — Complex Regional Pain Syndrome (CRPS) affects between 200,000 and 1.2 million Americans each year. There appears to be two to three times more women than men affected and any age group can be afflicted. This issue usually follows a trauma, surgery, or a period of immobilization where pain develops and never subsides in an affected limb. Over time it may actually grow worse.

There are essentially two subsets: Type I, which was previously called Reflex Sympathetic Dystrophy (RSD) and was preceded by an injury without direct nerve trauma and Type II, previously termed “causalgia,” which implied a direct nerve injury.

We have used numerous other terms to describe this entity such as “shoulder-hand syndrome,” “Sudek’s syndrome,” and ” Steinbroker’s syndrome.” Causalgia was first documented in the 19th century by physicians treating Civil War veterans who experienced pain after their wounds healed.

SYMPTOMS

The cardinal feature of CRPS is pain that is often described as burning, which is made worse by any kind of touch, including clothing, a bed sheet or even a mild breeze. It can progress to other areas on the body.

Other symptoms include:

abnormal changes in skin color: white, mottled, or red

abnormal sweating or chilling

edema

extreme pain sensitivity

stiffness, tremors

Most patients have experienced a minor trauma that doesn’t resolve as expected. It appears that there is a disruption in the healing process. Normally, when one has an injury, a signal is sent to the brain to register pain. This triggers part of the nervous system — the sympathetic system — to react, resulting in an inflammatory response.

The reaction is due to the “fright or flight response.” The blood vessels in the skin contract so more blood can be directed to the muscles so that a victim can move away quickly. In CRPS, the system does not turn off and the body continues to overreact. Therefore, the skin color changes and there is an excessive sympathetic response as manifested by sweating, tremors and pain.

There is no specific blood or diagnostic test for this disorder. It is based on the patient’s history and the constellation of symptoms.

TREATMENT

Treatment can be equally as frustrating as there is no specific treatment that helps all patients.

Medications are often prescribed to alleviate the pain, reduce stiffness and assist in sleep. Traditional non-steroidal, prednisone, antidepressants such as cymbalta, and anticonvulsants such as gabapentin or carbamazepine may be helpful. Narcotics may be an alternative for some patients and antihypertensive medications such as clonidine can often assist.

Physical therapy can help on many levels. It is important to control and maintain the movement of the affected limb and prevent weakening and contractures (loss of movement in a joint). The use of heat and cold, transcutaneous electrical stimulation, biofeedback and range of motion are crucial to an overall program approach.

Specialized injections to block the activity of the sympathetic nerves may be helpful both diagnostically and in treatment. These can be repeated if effective.

While this is not a psychological issue it can be quite traumatizing and often patients need assistance to address the impact in their lives. The loss of being able to do many of the work and recreational activities that are crucial to our lives can be devastating and if not addressed lead to a secondary disability.

On the average, patients seek care from five physicians before they are committed to a diagnosis and a treatment plan. Patient education becomes a crucial keystone to living successfully with this problem.

The Internet has provided a valuable resource for clinicians and patients in assuring patients that they are not alone, that treatment can be complicated but symptoms can be diminished, and that life can go forward. In certain instances the process has been noted to diminish and resolve over time. The National Institutes of Health Web site (www.nih.gov) can be helpful with the latest updates in clinical trials and treatment advances.

This column is provided by the Richmond County Medical Society. Dr. D’Angelo is a past-president of the Society, and has been an active member since 1994. He specializes in pain management, physical medicine and rehabilitation and maintains a practice in New Dorp.

(1) Upon appropriation of the necessary funding to support the work group and the education program, the department shall establish a reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) work group that is composed of both public and private sector members. The RSD/CRPS work group, in consultation with health care providers and health-related organizations, shall develop and coordinate an RSD/CRPS education program to promote public awareness of the causes of RSD/CRPS and the value of early detection, diagnosis, and treatment of this disease. The RSD/CRPS program shall include a public education and outreach campaign utilizing written materials and brochures to promote awareness of RSD/CRPS among consumers, health care providers, teachers, and human services providers and to enable individuals to make informed decisions about their health. The written materials and brochures shall include, but are not limited to, information regarding each of the following:

(a) Cause and nature of RSD/CRPS.

(b) Risk factors that contribute to the manifestation of RSD/CRPS.

(c) All available treatment options for RSD/CRPS including the risks and benefits of each of those options.

(d) Environmental safety and injury prevention.

(e) Rest and use of appropriate body mechanics.

(f) Any other information that is relevant to RSD/CRPS.

(2) The educational materials and brochures developed under subsection (1) shall be made available to the public through the department’s website or health promotions clearinghouse hotline and, if sufficient funding is available, the educational materials and brochures shall be distributed to local health departments, hospitals, and health care providers for distribution to the public. The RSD/CRPS work group shall also facilitate as a part of the RSD/CRPS program educational workshops that are open to the public. The workshops shall include, at a minimum, at least 1 physician presenter who is licensed under article 15 and is knowledgeable about RSD/CRPS.

(3) The department may accept and utilize federal or state funds or other public or private grants, gifts, donations, or appropriations to carry out the purposes of this section, including, but not limited to, promoting research to accurately identify, diagnose, and treat this disease.

A Lehigh County woman is inspiring others with her story of survival. She overcame tough odds, with the help of a very special friend. WFMZ’s Joscelyn Moes has the story.

Reporter Patti O’Donnell doesn’t go anywhere.. without Raven. The black labrador retriever has been her helper.. and best friend for the past 3 1/2 years. It hasn’t always been easy for Patti. Patti O’Donnell I just feel so blessed and so lucky to be here today. Reporter Back in 19-92 this former teacher and cross-country coach had just wrapped up practice with her team at Lehigh University.. when she was hit in the head with a lacrosse ball.. believed to be traveling at about 90 miles an hour. Patti I started having to retreat into this land of doctors, lawyers, and rehab. Reporter It wasn’t until 19-97 she was diagnosed with a traumatic brain injury.. and in 2001 she was told she had a nerve disease. It’s been an uphill battle for Patti.. but she’s fought on. Then 3 1/2 years ago she got a service dog.. Raven. He helps her walk, open doors.. he’s even trained to retrieve the phone should there be an emergency. Patti and Raven visit elementary schools together.. she talks about the importance of service dogs. Patti I just love it cause I’m back teaching again. Reporter Right now Patti is working on getting her doctorate.. She hopes to be teaching in the classroom again.. one day soon. Patti My life I see as one of the longest cross-country races I’ve ever run and it’s had its ups and downs but I can see the finish line now.

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Something For The Pain

Pain management is tailored for the youngest of patients

By Julie Young

Something For The Pain

Pain management is tailored for the youngest of patients

By Julie Young

While a child may cry when experiencing pain from a scraped knee, broken bone or other one-time injury, the reaction of pediatric patients with chronic pain may be quite different. Some of the smallest patients can not communicate their pain and others often stare out a window or disassociate themselves from what they are feeling on the inside.

For nurses who must respond to a pediatric patient’s pain, reading the signs can be similar to deciphering a foreign language. Body language, parent’s assessments and targeted programs are all tools nurses use to help this patient population on the road to recovery.

Reading the Signs

Nurses on the floor use various assessment tools to read a patient’s pain level, especially when that patient is too young to communicate their own pain. An infant may draw in their arms and legs when they are uncomfortable or may act fussy when they experience a lot of discomfort.

Suzanne Porfyris, MSN, APN, PCCNP, anesthesia pain service at Children’s Memorial Hospital in Chicago, said she uses a standardized scoring system to help alleviate her patient’s pain. “We teach our nurses and our patients’ families to look for the signs, and we have scales that can help us score babies,” she said. “We also understand that for the kids who can communicate, one person’s pain level is not the same as another’s.”

Porfyris instructs nurses to believe the patient when they communicate but not to ignore other possible signs of pain. She said just because a patient is not writhing in agony doesn’t mean they aren’t trying to escape the discomfort.

“When a child is sleeping a lot, it is a misconception that they aren’t feeling any pain,” she noted. “Kids who seem disinterested or who lose themselves in video games may look fine, but just because they are able to get their focus on something else doesn’t mean there is no pain.”

Listening to the family members can also alert nurses on the unit about the level of pain the patient is experiencing since the parent is around the child all of the time and can tell a nurse when he isn’t acting like himself. In many cases, when pain is managed properly, nurses get a chance to see a major difference in the child’s countenance.

“I may only see them twice a day so the parental input is important in what we can do for them and how we go about it,” Porfyris said.

Special Circumstances

Sometimes pain is an aftereffect of an illness or a surgical procedure; other times it is a symptom.

At the Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Children’s Hospital Boston at Waltham, MA, patients with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RDS), are admitted to a comprehensive multidisciplinary program for rehabilitation and treatment. RDS is a rare neurological condition that affects skin, muscles, joints and bones, causing severe burning and aching pain, skin pigment changes and temperature changes, and excessive sweating and swelling of extremities.

A division of the Pain Treatment Service at Children’s Hospital Boston, the PRRC opened in June 2008 and takes a simple approach to treatment: intensive physical and occupational therapy, and cognitive behavioral therapy to retrain the brain’s pain response. For many children, RSD can be successfully treated with outpatient physical therapy and cognitive behavioral therapy. The PRRC treats the small percentage of pediatric patients who are refractory to conventional treatment.

Judy Gaughan, MSN, RN, clinical coordinator of the PPRC, said the staff uses a multidisciplinary approach to help patients control their pain and improve their function.

“This is an incredibly painful condition and many of our patients have not ambulated or used the affected extremity for months, or even over a year, in some cases,” she said.

Gaughan added the program treats only four patients at a time, with the length of treatment varying from 3-5 weeks, depending on patient needs.

Retraining the Pain

Cognitive behavioral therapy is a key component of the program. Patients learn relaxation, guided self-imagery and deep breathing as tools to gain some control over their pain. Gaughan said some of the patients admitted to the PPRC have been unable to tolerate textures of clothing or to tolerate wearing socks and shoes.

“They have withdrawn from their peers and have difficulty attending school,” she said. “The kids come from all over the U.S. and for many of them it is the first time they meet another person with the same disease.”

By working with a variety of disciplines, including physical therapy and occupational therapy specialists as well as medical staff, psychologists, nutrition specialists and even teachers, this program helps get pediatric pain under control. Since the inception of the Pain Treatment Service in 1986, more than 750 children with RSD have received treatment.

“This program is a comprehensive, multidisciplinary way of retraining kids to deal with their pain and regain their lives,” Gaughan said.